Genomic research results and incidental findings with health implications for a research participant are of potential interest not only to the participant, but also to the participant's family. Yet investigators lack guidance on return of results to relatives, including after the participant's death. In this paper, a national working group offers consensus analysis and recommendations, including an ethical framework to guide investigators in managing this challenging issue, before and after the participant's death.

It is 2048 BE; the Anonyma Network, represented by a young philosopher known affectionately as Annie, offers this fiftieth anniversary edition of Mary Daly's revolutionary work of Radical Elemental Feminism, Quintessence ... Realizing the Archaic Future. Mary Daly has, for the past thirty years, been at the forefront of radical feminist thinking. Here she exposes and examines the abuses women face at the end of the twentieth century - for example, the dangerous rhetoric of the Promise Keepers; the systematic rape (...) of women in war zones like Bosnia; and the invasive manipulation of women's bodies and all of nature in genetic engineering, fertility experiments, and cloning. But she also offers a "Far-Out Vision and Hope for Wonderlusting Women" who are beginning to discover Quintessence: Spirit that fills the universe and gives it life and vitality. (shrink)

Returning genomic research results to family members raises complex questions. Genomic research on life-limiting conditions such as cancer, and research involving storage and reanalysis of data and specimens long into the future, makes these questions pressing. This author group, funded by an NIH grant, published consensus recommendations presenting a framework. This follow-up paper offers concrete guidance and tools for implementation. The group collected and analyzed relevant documents and guidance, including tools from the Clinical Sequencing Exploratory Research Consortium. The authors then (...) negotiated a consensus toolkit of processes and documents. That toolkit offers sample consent and notification documents plus decision flow-charts to address return of results to family of living and deceased participants, in adult and pediatric research. Core concerns are eliciting participant preferences on sharing results with family and on choice of a representative to make decisions about sharing after participant death. (shrink)

The successes of the Human Genome Project have ushered in a new era of genomic science. To effectively translate these discoveries, it will be critical to improve the communication of genetic risk within families. This will require a systematic approach that accounts for the nature of family relationships and sociocultural beliefs. This paper proposes the application of the Family Systems Illness Model, used in the setting of cancer care, to the evolving field of genomics.

In her signature style, revolutionary Mary Daly takes you on a Quantum leap into a joyous future of victory for women. Daly, the groundbreaking author of such classics as Beyond God the Father and The Church and the Second Sex , explores the visions of Matilda Joslyn Gage, the great nineteenth-century philosopher, and reveals that her insights are stunningly helpful to twenty-first-century Voyagers seeking to overcome the fascism and life-hating fundamentalism that has infused current power structures. Daly shows us once (...) again that Wild, Wise Women can learn to take charge of the current destructive patriarchal forces and use this as an Outlandish opportunity for change. (shrink)

Objective:Prior research examining sexual and intimacy concerns among metastatic breast cancer patients and their intimate partners is limited. In this qualitative study, we explored MBC patients’ and partners’ experiences of sexual and intimacy-related changes and concerns, coping efforts, and information needs and intervention preferences, with a focus on identifying how the context of MBC shapes these experiences.Methods:We conducted 3 focus groups with partnered patients with MBC [N = 12; M age = 50.2; 92% White; 8% Black] and 6 interviews with (...) intimate partners [M age = 47.3; 83% White; 17% Black]. Participants were recruited through the Fox Chase Cancer Center Tumor Registry and the Cancer Support Community. Qualitative data were analyzed using the Framework Method and Dedoose software.Results:Qualitative analyses revealed several key themes reflecting ways in which MBC shapes experiences of sex/intimacy: the heavy disease/treatment burden leads to significant, long-term sexual concerns and consequent heightened emotional distress for both patients and partners ; viewing the relationship as having “an expiration date” influences patients’ and partners’ concerns related to sex/intimacy and complicates coping efforts; and information needs extend beyond managing sexual side effects to include emotional aspects of intimacy and the added strain of the life-limiting nature of the disease on the relationship. The heightened severity of sexual concerns faced by patients with MBC, compounded by the terminal nature of the disease, may place patients and partners at risk for significant adverse emotional and interpersonal consequences.Conclusion:Findings suggest unique ways in which sex and intimate relationships change after a diagnosis of metastatic breast cancer from both patients’ and partners’ perspectives. Consideration of the substantial physical and emotional burden of MBC and the broader context of the relationship and intimacy overall is important when developing a sexuality-focused intervention in this population. Addressing sexual concerns is a critical part of cancer care with important implications for patients’ health and quality of life. (shrink)